FARMINGTON — To avoid upsetting her mother, who has dementia, Cheryl Barkow used to go into the bathroom, turn the shower on and cry.

With the flowing water masking her sobs, she would stand alone for a few moments, feeling helpless and unprepared to handle caring for someone with such a life-altering brain disease.

Then she took a class for at-home caregivers of dementia patients, sharing what she learned with her husband, Larry, who helps care for her mother, Alice Osborne.

After the class, things started to get better for the couple and today they have been Osborne’s full-time caregivers for more than two years.

Cheryl Barkow is among 660 caregivers in Maine who have taken the six-week course — known as Maine Savvy Caregiver — which is a free elderly services program that is trying to meet a growing demand for educating the thousands of unpaid, under-trained at-home caregivers across the state.

She sat at the kitchen table last week with her 93-year-old mother, encouraging her to smile while having a cookie and tea after lunch.

Osborne, in a wheelchair, the large colorful shapes of a partially finished puzzle laid across the table in front of her, looked up at her daughter and smiled.

“I didn’t understand anything about (dementia) before the class, and I learned to keep her smiling and content, and how that’s what it’s all about,” Cheryl Barkow said.

“She’s got such a great smile,” the daughter said, holding her mother’s hand and patting her shoulder reassuringly.

Larry Barkow, 64, said the tips his wife brought home from the class made a big difference, teaching him about the many pitfalls caregivers can encounter unknowingly.

But learning about so many other people taking care of their parents, grandparents, siblings and spouses with dementia is really what changed his approach to being a caregiver, the Vietnam War veteran and retired truck driver said.

“The important thing is to know that you’re not alone,” he said.

There are more than 37,000 people in Maine with dementia, a term used to describe a range of diseases that damage brain cells, affecting everything from the person’s memory to physical abilities.

About 75 percent of them have unpaid at-home caregivers, many of whom are family members caring for the typically elderly patients, according to Laurie Trenholm, executive director for the Alzheimer’s Association Maine chapter.

With Maine’s aging population, the need to train these caregivers will only increase in coming years. It’s a problem that is tied to the inability of health care facilities, which have state regulations controlling the number of available beds, to provide enough space for the growing number of dementia patients, Trenholm said.

There is constant debate about getting more space in health care facilities dedicated solely to dementia patients, many of whom have been on waiting lists for years, but this discussion also has to take into account realities about the disease, according to Trenholm.

It’s well established medically that people with dementia have been shown to fare better at home, and providing better training to help keep them at home longer has been the solution many experts say is the key, she said.

“Dementia is a lot more than memory loss; there are issues with (patients) wandering and other safety concerns and a lot of education is needed to make the caregivers able to make it more safe (for patients) and feel supported themselves,” Trenholm said.

“This is really where we can build capacity,” she said.

‘A tremendous need’

There is no cure for Alzheimer’s disease and some other forms of dementia. The diseases are typically progressive and symptoms get worse as time passes, eventually reaching a point where the person loses mental and physical abilities.

These realities of dementia, along with other societal fears attached to brain diseases, keep many people from seeking medical advice when warning signs start showing up.

It’s a problem that has made it tough over the years to collect data on the diseases, which is used to decide issues about everything from funding for education to the number of beds in health care facilities, according to Trenholm.

“People are reluctant to go to their physicians to get diagnosed because there is no prescription they can get to make it better,” she said.

The state controls the number of licensed beds available to dementia patients, who have specific care requirements beyond other elderly people in nursing homes, according to Trenholm.

But a range of issues affect whether a dementia patient is cared for in the facilities. Availability can vary depending on location, level of care, health insurance issues and other financial and personal factors, she said.

More beds are available to dementia patients in populous regions of Maine, for example, and private nursing homes have more open beds than public facilities, according to Trenholm.

For most people, however, private nursing homes are not an option because the cost is prohibitive, she said.

Meanwhile, the beds provided through MaineCare often have waiting lists filled with patients, some of whom have been there for years.

Trenholm said she didn’t know the number of people on waiting lists, saying it is a significant number out of the more than 37,000 patients statewide.

“We know there is a tremendous need because we hear it every day,” she said.

Although it’s best to keep people in their home as long as possible, at some point full-time care becomes necessary due to the progressive nature of dementia, according to Trenholm.

There are home-health aides and other services that support people providing at-home care full-time, but even those costs add up quickly and become unsustainable for many families, she said.

The average lifespan after a patient is diagnosed with Alzheimer’s is eight years, but it can be up to 20 years in some cases, according to Trenholm.

Maine Savvy Caregiver is trying to help people navigate all the challenges tied to dementia, and decisions on making the transition to a nursing home are no exception, Trenholm said.

“We’re trying to build awareness so that the family can make better choices based on the best information available,” she said.

‘A decision you have to make’

The Barkows described caring for someone with dementia as a constant learning experience, full of life-changing decisions and stresses that can wear on families, friends and the caregivers.

Cheryl Barkow is the youngest of her mother’s 13 children. Osborne also has 36 grandchildren, more than 50 great-grandchildren and 10 great-great-grandchildren.

A health aide from Elder Independence of Maine, a nonprofit home care agency, comes for two hours to help the couple every morning. Another aide comes once a week to give the couple five hours away from home.

They decided to bring Osborne home from a nursing home more than two years ago after watching her slowly get worse, refusing to eat and deteriorating mentally and physically.

At first, Cheryl Barkow stayed home to care for her mother while her husband worked. Larry Barkow, however, took an early retirement from his career as a truck driver shortly after his wife hurt herself while caring for Osborne.

Despite having little understanding of the disease at the time, the couple said they quickly realized what it takes to be a caregiver.

“It’s more of a commitment than anything else,” Larry Barkow said. “This is a decision you have to make and it’s learning our lifestyle had to change around her because it’s better for you as well as for her.”

Doctors have told them at-home care saved Osborne’s life, and she has shown steady signs of improvement in her health since moving into their Farmington home, the couple said.

Maine Savvy Caregiver also gave them some of the tools and support they needed to get to this point, they explained.

The couple learned how to diffuse anger and frustration, for the patient and caregiver, by avoiding painful memories, which some dementia patients can dwell on, Cheryl Barkow said.

“They taught me all those small things you may not think about,” she said.

The couple had no problem reeling off some of the tips from the class, even though it has been more than a year since Cheryl Barkow attended the program.

They learned when a painful memory comes up, it’s important to move on to something more calming. Another tip: Facial expressions are an important part of understanding frustration and confusion.

“You’ve got to get through the tough times and enjoy the good times. The class taught me that,” Cheryl Barkow said.

David Robinson — 861-9287

[email protected]

 

 


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